Whack-a-mole next...
 

Welp...after 12 years of MBC and constant treatment, my slow progression has finally sped up. Latest PETscan showed mucho metabolic activity in sternum, manubrium and lungs.

BRAIN MRI
Brain MRI no bueno, 6mm fucker in right frontal, scheduled for True Beam zap next week. New words this month: intramedullary, meninges, meningeal, intrathecal, Ommaya reservoir, Rickham port, Buckingham palace (just wondered if you were still reading)...

SPINE MRI
C2 SPINAL CORD !!! has a lesion IN THE CORD !!! which points to Leptomeningeal disease. Sob sob sob. I decided to wait on the spinal tap because I'm not putting anything into my head at this time anyhow and the taps can be false negatives and I wanted to go dance Thursday night no do a spinal tap.

Will do whack a mole approach until I can gather more opinions and gather more wits. I got fitted for the head and face suffocation mask. Why the docs let me do that "fitting" without Ativan is a mistake they won't make again. Someone had the gall to say it's like a spa treatment! Yes, if the spa you attend has a 300 pound sweaty hot sumo wrestler sit on your face while they wipe you all down with ice water. I've been to many spa treatments in my lifetime, there's never been a spa MRI machine as part of the rejuvenation!

C2 cord lesion is also the reason I'm feeling random numbness on my right (unaffected) breast, arm pit, and creepy crawlies on my scapula. All right side.

C2 lesion due to be zapped via SBRT also next week - hoping like mad it doesn't cause a terrible side effect like PARALYSIS from the neck down and hope I don't drool while I'm unconscious from the scoop of Ativan I plan to swallow prior.

L1 is again crazy hot and since I just had rads in 2016 it is too dangerous for lower paralysis for rads again and no surgery either, too complicated unless risks of surgery outweigh risk of none. L1 is the cause of random numbness in groin, right tush, right leg, outside calf and bottom of foot.

But hey, what's a little Cancer Fire among friends?!?

There is so much uncertainty with regard to treatment and options.

Not sure I can put a reservoir in my head and pour in chemo. Not sure that intrathecal herceptin will suddenly work on cancer that is herceptin resistant, and how would my allergy reaction handle herceptin in my CNS? I am the course-of-least-resistance-girl, and none of that sounds good. Also on the forefront of my mind is that I DO NOT HAVE SYSTEMIC CONTROL. I just went back on Herceptin/xeloda and have no idea if that has had one iota of affect. Too soon to know.

I did look into the her2+ CAR T trial at City of Hope. I signed consent and will be on some list for some steps in the future. It's very early phase, slow cautious enrollment, and not sure again, on my herceptin allergy and inserting engineered trastuzamab into all my hopped up Tcells. I don't quite understand all the science, but I'm on a need to know intake for now, due to extreme emotional overload. And fear. And grief. And anxiety. And F-bombs.

I also signed Death with Dignity papers and got that started. Sorted out the important who wants what with my kids, while I'm still able to interject and add stories with these various pieces and dishes and jewelry and art. And now I know what I can give away to other friends and family.

I am not writing the ending but I do not wish to be caught off guard, somewhat paralyzed and unprepared.

The rads oncologist called me at 9:30 last night to say they scheduled me for Monday. I haven't really had time to deep obsess if this is the right place for the right procedure but have kind of made peace with my inability to figure out a different plan. These same people have been zapping me for the past 23 years. They must know their stuff. The last brain zap in 2008 got rid of the spot. I'm thinking he's had 10 more years of experience, so he can surely hit this new spot with similar success.

I'm not sure how hard I am willing to fight unless QOL can be reasonable. Time in and of itself it not significant. BUT time with reasonable QOL is worth the fight.

I welcome all input and ideas!
And with much gratitude to all my friends on here, old and new, friends still here and those in a different "place" your company on this journey has been priceless.
Love, Flori

Re: Whack-a-mole next...
 

SCG

A long shot, but I remember reading about long term control of metastatic pancreatic cancer using Low Dose Naltrexone (4.5mg at bedtime) combined with intravenous Alpha Lipoic Acid 600mg IV twice a week . Look at the protocol. I dont see anything with these drugs specific to pancreatic cancer. Low dose Naltrexone stimulates the production of a natural brain opiate called Met-Enkephalon and this compound is an immunostimulant.
You would have to find a doctor willing to use these things. Oncologists tend to be super conservative.

Paul

Re: Whack-a-mole next...
 

That's a lot to have to take in! It sounds like you got a lot of answers too. Not necessarily good answers but sometimes the knowing is better than speculating so that you can make informed decisions - like the QOL issues you mentioned. But it also sounds like it brings up a lot more questions too. I hate this disease! And I'm sorry you're having to deal with and go through all this.

Is perjeta part of your drug cocktail?

Sending cyber hugs, prayers and good thoughts your way.

Re: Whack-a-mole next...
 

Flori - hard to find words, but just keep dancing as long as you can.
Sending love and strength.....Pam

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Flori, I wish I had words of wisdom and advice but can only send you my best wishes and love and I'm hoping this won't be as tough as it sounds.

Re: Whack-a-mole next...
 

Whack, whack, whack! Go after as many lesions as your team will engineer. Go shrink your tumor load.
I have never had intravenous Alpha Lipoic Acid, but I have taken a 300 mg tablet that also has 330 mg of biotin almost daily for many years. The container says it promotes Glutathione and antioxidant status. Some study I read about pointed me to this supplement.

You have my love and forever admiration for your "come and get me" attitude, along with "if you get me, you will be sorry."

Ned in your head, coming right up. YESSSSS.

Re: Whack-a-mole next...
 

Hi Flori, no words of wisdom or advice, everyone before me has already said everything so much better than I can. I am sending you all the love and strength I can. Like Pam says, keep dancing as long as you can.


Carol Ann

Re: Whack-a-mole next...
 

Sometimes all you can do is "dance it out"..... Your spirit and fight are amazing. Love it! I don't have any advice or wisdom. Just know we are all thinking good thoughts and sending it your way.

Re: Whack-a-mole next...
 

Aw, f__k, Flori! No words of wisdoms, only love and positive thoughts.

Re: Whack-a-mole next...
 

Welp. Leave it to you to disperse the worst damn news and still make me laugh! You should have been a comedy writer.

Well, f*#k, the news is shit and I can easily understand feeling dazed and unable to fully take the helm. I mean, where to steer the danged ship to keep it off the shoals? Wack-a-mole until you can find some systemic treatment is seemingly the only course.

I do not blame you for being loathe to pour crap into your CNS. Sheesh, sometimes I think these Oncs figure they can scare us to death rather than bother to treat us! You have the balls of 7 men, Flori, so if anyone can toe up to the line for intrathecal infusions, it's you. Still, I do not blame you for not relishing the idea.

Flori, please try to keep us posted. You know we are all here in your corner, scared with you and for you, and wishing we could DO something to pull you from the fire! I have to end now, because I cannot see through my tears. Just keep dancing in that fire as long as you can, my friend, as we pray for healing rains.

Re: Whack-a-mole next...
 

Flori

If you don't want anymore traditional treatment you could try one of the Alternative clinics in Southern California that treat cancer with diet and vitamins
that reduce inflammation. I know there is one in Costa mesa, but they exist in other cities in Southern California. I read the results of some of these treatment and have to admit Im impressed. Hope this helps a bit.

Paul.

Ps. Just an afterthought. As far as oral Lipoic acid goes it might be a good idea
to separate taking the Lipoic Acid from divalent metals like zinc. Lipoic acid appears to be a metal chelator. Believe it or not I reads this in Hulda Clarks book " a Cure for all Cancers. She used Lipoic acid quite frequently with her patients. After reading this I did some research on it and she was correct. The research on Lipoic acid indicated that it inhibits Nuclear Factor Kapa Beta which when activated acts in a very strong way to enhance the survival and growth of cancer cells. Interesting.

Re: Whack-a-mole next...
 

Good luck Flori! Sending positive vibes and hugs!


all the best
caya

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Buckingham Palace!! Your spirit is amazing Flori. Sending you love and support.
Marie xx

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Dear Flori,

I can't imagine how very tired you must be of this battle that just rages on and on and on....

I was so hoping you would finally get some positive results. At the risk of sounding a little whack-o, I am attaching this link for your perusal.

https://www.mycancerstory.rocks/ I am keeping this protocol (Joe Tippen's) in my back pocket because I know there will come a time when I can't keep on with the Kadcyla, as the side effects are many, and my quality of life has really suffered. The use of anthelmintics seems very safe, and I figure, when all else has failed, what have I got to lose. If nothing else, it is a most fascinating read, and I've always liked thinking outside of the box!

Sending you my best positive thoughts and big hugs!
Kim

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Joe Tippen's journey is amazing. And I totally agree with his outlook and the path he took. It was his choice and it is working for him. And he doesn't have worms! Always a good thing.

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They have been using anti-worm drugs for a long time. The first one used was levamisole.
It seems to stimulate T cell action. It was used for colon cancer after surgery then for some reason it fell out of use. One problem with Levamisole was possible bone marrow depression so it would be good to have Felbamisole (Joe Tippens drug) monitored by a physician. Only physicians who use alternative therpy to treat cancer would be willing to try it. There is a human drug related to Felbamisole called Mebendazole but the Felbamisole seems to be more effective. Vetinary drugs are much cheaper than human drugs and just as effective. Levamisole for vetinary use in treating worms is cheap. The human version Ergamisol is very expensive and is the same drug. I agree that Joe Tippens journey is amazing to read.

Paul

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Felbendazole not Felbamisole. I guess I was confusing Felbendazole with the anti-siezure drug Felbamate. I managed to Xerox some articles about Felbamisole as a treatment for cancer. Sounds very interesting. I think the brand name sold is called Panacur

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I read what I printed out about Fenbendazole. It seems to work by blocking microtubules like Taxol but has few side effects unlike Taxol. it also inhibits Glucose uptake in the cancer cells and cancer cells are very dependent on large amounts of Glucose. Joe Tibbems used the 1gm Panacur C packets each containing 222mg Fenbendazole. He took one packet daily for 3 days, went off of the drug for 4 days, then started again for 3 days then off,then on etc etc. He apparently plans to take it for the rest of his life with his doctors blessing. Very interesting.

Paul

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Just read Joe Tippen's story (see Kim in CA's post above) and find it fascinating.

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I also was fascinated by the Joe Tippen story. Quackwatch would call it phony but I have long lost any trust in the powers that be as far as cancer is concerned. It has become a very political disease, politics being and inclusive word for power and money.

Kim in California mentioned about using it "just in case". Not a bad idea, I would do the same thing but those who think like this might also think about "stocking up" now with the Fenbendazole. It is available now OTC but in a few months a few years, who knows. Lambert Vet supply sells it in 1000ml 10% bottles.

Working at Sloan kettering in 1978 forced me to come to face with some very unpleasant realities that were very frightening. It still is a very frightening situation. In the late 1970s the late Linus Pauling came out with the idea that high doses of Vitamin C might be preventative of cancer so I said to myself: "Why not take Vitamin C, it really cant hurt me and who knows , it just might help. I still take it and Selenium and some other things ie Coenzyme Q10 (it also lowers my blood pressure) and Lipoic acid (this also helps with blood sugar. OK fine BUT

Lets go back to the year 1994. I had my own pharmacy then. The FDA wanted to take all the supplements off the market and make things like Vitamin C 1000mg, Vitamin E 400 units, Selenium 200mcg etc etc prescription drugs. This really shook me up. It never occurred to me that things like this could happen. I had been taking Vitamin C in what could be called megadoses for 26 years. it would suddenly be unavailable? To make a long story short, the FDA backed down due to congressional pressure. I guess people were threatening individual congressmen (and women) with non re-election if the FDA wasnt stopped. They stopped there anti supplement tirade for the time being. Supposedly they are going to try again. Who knows?

OK fine, suppose some people did stock up on Vitamin C, Selenium, "Fenbendazole"
whatever. What about the expiration dates? The Vitamin C you buy today will say expires 9/21 on the bottle next to the lot number. So will the selenium etc etc or maybe 5/22.

Thats a hard one to answer. But the Veteran's Administration throws out by law millions of dollars of expired drugs. I think it was in the late 1990s. They started saving expired drugs to test the potency after the suppossed expiration date. Most of these drugs were still pharmacologically active 5, 10 even 15 years after the expiration date.
They begged the FDA to let them use these drugs but the FDA refused. Some drugs like nitroglycerin are very unstable but minerals like zinc gluconate, potassium gluconate,
magnesium chloride are probably pharmacologically active for many decades if not longer. Yet if you buy a bottle of Zinc Sulfate from Walgreens today it will say "expires 7/21 or something like that. What about Fenbendazole? I dont know. It probably would be more stable in powder form that the 10% liquid.

Sorry this has been so long winded. Please excuse the inevitable spelling errors. If you want to work with your doctor using unproven but possibly effective therapy you have to be able to get and afford this therapy. Prices are going sky high with drugs.

Paul